Nora’s GLUT1 test was negative, with 91% sensitivity. With no other clinical signs of GLUT1 deficiency in her history (besides seizures and diet success), Nora’s doctor is feeling confident that this is not her issue.
That’s a good thing, because if it were positive she would need to be on a diet therapy for much longer, at least until adulthood. On the other hand, if she were positive we would have a better idea of prognosis into the future. The way would be a little more clear.
All in all, this is very fine news. Nora is still going strong, happy and seizure-free. She’s turned into a delightful 5 year old, transforming into a kindergartener before our eyes.
Summer is lovely here while settling into our new house. I feel close to being moved-in and ready to bake again. Nora has not had any fancy new foods for awhile, relying on her top 15 foods more than ever. That’s all fine and dandy. We got a few red currants from our bush this year and integrated walnuts into her diet. It was an easy way to make something new. She has also liked iced tea, made with a caffeine-free herbal tea and cream.
Happy summer to all!
Your site is so wonderful! Thank you for posting your experience. I have been in this funk lately. I am having a hard time organizing our M.A.D. Life for our son. Your site has given me so much guidance. Thank you!
Hi Robyn,
Thank you for the kind words. It takes awhile to get organized and a routine that works for your family, so keep at it. One day when I was in the midst of the getting-started funk I saw a bumpersticker that simply said “patience.” I bought it on the spot and put it in my kitchen. It is not always easy, so it is nice to have a reminder. Patience with myself, and patience to let the diet work.
Best of luck! Stay in touch.
Christy